Dating with disease calls on extraordinary compassion and support from a partner.
Andersen-Tawil Syndrome, a rare genetic disorder, causes muscle weakness, heart irregularities and attacks of full blown paralysis. During an attack, I am fully conscious, can hear and feel everything, I just can't move; I literally look dead. It is a very scary thing to witness one of these attacks for the first time. My daughter and co-workers are used to the attacks having seen them many times and knowing what to expect and what to do.
In February 2007, I met a man who turned out to be an angel. As we began dating, I was upfront with him about my disease, what happens and what to expect. Yet, I still dreaded the day he would witnessed an attack. I was sure he would decide it was too much for him to deal with. Fortunately, I was wrong.
When the inevitable finally came, I was home with my daughter and boyfriend. The attack came on fast, but he never panicked. He watched and listened as my daughter administered my life-saving potassium and explained to him to watch for signs that my esophagus and diaphragm were paralyzed, both indicators that a trip to the ER was necessary. I could hear him asking her all kinds of questions, never with a sense of panic in his voice. He knelt at the side of the bed holding my hand, speaking softly and reassuring me that I was doing fine and that he and my daughter had things under control. He stayed there for an hour before I finally started coming around and moving again.
After witnessing the attack, he researched online to learn everything he could about Andersen-Tawil Syndrome. He knew I belonged to an online support group, so he got online and asked a lot of questions. He wanted to know this disease inside and out, at least what there was to know about it.
That was the first of many attacks as well as other serious mental and physical health issues, yet he still continued to love me, support me and encourage me. He gets frustrated sometimes, but it is mainly because he can't do anything about my disease. He is over-protective at times, at least in my opinion, reminding me when I am having a good day not to overdo it, to slow down and rest more. He's had plenty of opportunity to run, but he hasn't. In fact, we got married.
When we met I was a hospice nurse and managed the local office. Right after we got married and returned from our honeymoon my disease took over my body full force; I haven't been able to work since. There was a period of time when I required total care and he never once complained about bathing, changing and feeding me, in addition to doing everything around the house.
I am now on disability and, even though I can do many things for myself now, I still require a lot of assistance. Our entire married life has been consumed by this disease, numerous trips to doctors and hospitals and mounting bills that we cannot pay. He is still here with me, reminding me daily how much he loves me.
Together we have faced each health difficulty head-on, and so far we have managed to get through them all. I don't know how I would have managed this past year without his love, support and undying devotion to me and our marriage. When we said "in sickness and in health, till death do us part," we not only meant it; we live it every day.